Misunderstood

 

One of the things that has always wound me up since becoming chronically sick due to a myriad of medical conditions is the complete lack of understanding from about the conditions or the way they can make me feel. Despite Fatigue being a symptom of PoTs (postural orthostatic tachycardia syndrome) and EDS ( Ehlers Danlos Syndrome) medical professionals seem really surprised when you tell them you are knackered 100% of the time, no matter how well you slept. If the people who are supposed to get it, you know the experts fail to comprehend that you are dealing with levels of exhaustion they can only imagine, then what help is there for the non medical people in your life?

 

A few years ago I really lost my shit with someone who should have known better, they asked me how I was and I said I was really tired. Without thinking they said “yeah I am really tired too”.

“ No I mean I am really f**king tired, like I feel like I am walking around in a dream” I snapped.

“Yeah I get that when I don’t sleep well” They replied

I am not ashamed to admit that I really lost my temper as at this point I was in a cycle where I didn’t have more than 2 hours sleep a night for three nights and on the 4th I was sleeping 12-16 hours but waking up still feeling drained. I was hallucinating on the third day due to the level of tiredness I was experiencing. I had discussed this frequently with the person in question, they were not unaware of the difficulties I was experiencing on the sleep front. Yet even with all the information in front of them they couldn’t connect up the dots that going without sleep for nights on end didn’t just leave me tired, they left me barely functioning. It left me feeling as though a) this person had never actually listened to me when I was talking to them or b) that they didn’t believe me when I said how little sleep I was getting or c) they actually didn’t give a shit, I was always moaning I was tired. Any one of those scenarios is not one that leaves you feeling good about yourself.

 

After losing it with them and having to educate them in the difference between my tired – it doesn’t matter how much I sleep I am always feeling fatigued / wiped out and their tired, if they have a decent night’s sleep they feel refreshed, they never tried to claim that they felt tired in the same way I did again. Now don’t misinterpret me, I am not saying my tired is special or I am the only one in the world who feels like this. Ask most people with a chronic health condition / illness / disease and they will tell you the same, that sleep no longer leaves them feeling refreshed. Yet so many people in the medical profession will deny fatigue is caused by a person’s current illness / condition and will offer another label such as chronic fatigue syndrome – that’s a rant for another day!

 

I’ve noticed now the CSF leak is back how very few people actually understand it, I am talking close personal friends who witnessed how sick I was in 2016. So I am struggling to understand why they don’t remember that I have to lie down when the pain strikes etc. It is deeply frustrating but maybe I am expecting too much of them? Am I falling into the trap of believing that I am so important that they should remember this? I am also shocked by the number of people who have said things like

“ Oh that’s such a shame after you’d healed as well”.

Whilst I have said I have self healed I have also been careful to state it was to an extent, it had never gone away completely. I was able to spend many more hours upright but by the end of the day I was getting positional headaches that would only be relieved by lying down. I would also get photophobic at the end of the day, bright lights from screens including the TV would feel like they were burning a hole in the backs of my eyes. So whilst I was aware things had vastly improved for me, I was also aware that I was still leaking just at a much more slow rate.

 

I’ve also been really clear to those around me that it was highly likely that the symptoms of a full-blown leak would come back. The leak was probably caused by me having EDS,  as I have a weakness in the dura due to a previous lumbar puncture ( the protective covering around the spinal cord and brain) there would always be a weakness. So it’s frustrating when people question that the leak has returned – like the gp did last week. There is no mistaking a leak headache once you’ve had it. It is a pain like no other, it’s the only head pain that makes me clutch my head. I also get stupid comments from people like

“oh when I get a bad headache I soldier on because I have to. Not everyone can just go to bed because their head hurts”.

That’s when you know that person isn’t experiencing a CSF Leak headache because I will be blunt there is no fucking choice with a leak headache. You know when you see medical dramas and people collapse to the floor in pain, that’s what a leak headache is like. It hits you like you been attacked on the back of a head with a shovel. It makes you drop to your knees, if I could cry with the pain I would but when it strikes I am unable to do anything because it literally takes my breath away.

 

Somedays I am lucky and I can manage a few hours upright before I have to lie down. Other days I am upright for minutes and then I have to lie down. It is not a lifestyle choice it is the only way I can survive. It’s still not currently as bad as it was in 2016 and I am determined not to let it get that bad. Before I would push through until I was at the point of collapse. Now once the head pain starts I lie down, yes it’s frustrating but I’d rather lie down immediately than keep pushing to the point where I am bed bound for days on end. The only thing that works for a lot of people with a leak is lying flat however there are those who have leaked for so long that lying flat no longer reduces the pain that they are in.

 

Painkillers just don’t work on this headache, nothing I have ever taken has ever stopped the headache and that is the same for almost everyone with a leak. You get relief when lying flat when you have a leak because the fluid is no longer fighting gravity to be circulated around your spinal column and brain. By lying flat you increase the level of fluid surrounding the brain, which is what provides the pain relief.  Somedays within 30 minutes of lying flat the pain is gone other days it can take several hours and I am still left with a headache. However once upright again the headache will return. Obviously life spent flat on your back is not very fulfilling, its reduced the amount of sewing I can do as not only does the leak cause me pain this time it is affecting my vision. Its giving me quite a bit of double vision / blurred vision. I am having to use a magnifying glass and my reading glasses to be able to thread needles ( that is whilst using a needle threader both on my machine and when I hand sew). It makes things so much slower but I have to keep my hand in because without sewing I would be lost completely.

 

I have managed to make  a few bits, quite a bit was completed before the leak started and some of it has been completed in snatched moments when the levels of head pain are low / manageable. I have been able to finish items by hand whilst lying down so that’s a bonus. So here are some photos of what I have been making lately

 

I’ve been making a lot of baby bibs, some have been gifts and others have been paid to make.

 

 

Cushion cover made before the leak started – 

Travis bag for my Instagram Friend

 

I also made some voodoo dolls for a bit of a laugh, I never thought in a million years that people would want them but my (twisted) friends have gone crazy for them. Thankfully they all know how poorly I am at the moment and don’t expect me to rush to get things done. One of these is making its way to the USA as we speak. It’s my very first item that has gone to the USA.

 

So I still managing to do some sewing, it’s not as much as I would like but it’s enough to keep me sane at the moment.

 

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My week

 

Over the last week I have been quite unwell, culminating in an emergency appointment at the doctors surgery yesterday. As is usual for me it wasn’t clear what exactly was wrong. I had severe abdominal pain in the lower right quadrant – I’m no stranger to abdominal pain, I have suffered with it for as long as I can remember. I can remember countless home visits by the gp where I was yet again diagnosed with a grumbling appendix.

 

I don’t think what I had yesterday was my appendix – its still sore today ( just not as bad). I think it is actually a cyst on my ovary, the doctors found one in 2015 but as it was only 2cm in size the protocol was not to monitor it. For years every few months I would get a pain in my lower right side. Loads of times I was convinced it was my appendix but after they found the cyst I realised that this made more sense. I started to track when I had the pain, it was always between the 20th to the 28th of each month and would last a few days. However over the last six months every two or so months the pain ramps up. I have a reasonably high pain threshold and it takes a lot to make me go to see the dr, let alone ring them up and demand an appointment. Normally I’m the patient running in the opposite direction.

 

Yesterday I couldn’t stand up straight when it was at its worst and when I was on the phone to the duty doctor I was curled up in a ball on the bed. I didn’t just have pain on the right side but the whole of my insides felt sore and were burning.  Thankfully the duty doctor agreed that I did need to be seen and set an appointment for an hour later. Thankfully Mr Myasthenia Kid was day off so he could drop me down there. I also had a pot to piss in ( ha ha ha ha!) my old gp used to give me a sample pot to use when I suspected I had a UTI. I forgot yesterday to ask for another one to replace it.

 

By the time I got to the doctors appointment the pain was already decreasing. I felt a bit of a fraud to be honest. Whilst I am typing the pain is ramping up again, I’ve taken pain killers so hopefully it will settle it again. I haven’t got a temperature and today I am not feeling unwell. I don’t feel right – I think all of us with a chronic illness or condition know when our bodies aren’t feeling right. Mine hasn’t felt right for a few weeks, initially I put it down to anxiety, stress, then the heat. But I know in my heart of hearts it’s more than that. It’s like the time I kept telling my old hospital consultant that I felt terribly unwell, I didn’t know what it was but he needed to listen to me. The arrogant twat didn’t, he sent me reluctantly for blood tests. Five days later I got a snotty letter telling me all my bloods were normal. Three days after that letter he had to backtrack because my prolactin levels were stupidly high. See I knew that something was wrong, never ignore your instinct about your health.

 

My urine was dipped and nothing was showing. I then had to get up on the couch and be examined. I knew it was coming, I made sure that front and back bottoms were scrupulously clean as I feared gloved fingers could be inserted into either orifice. Luckily I avoided that one! My stomach was palpated, as is usual the doctors always ask about the scar on my stomach. I’ve had a scar on my stomach since I was 3 and a bit. It’s been there so long that unless someone draws my attention to it I don’t remember it’s there. Now that will probably seem strange as it’s a horrific looking thing all thanks to EDS.

 

If I wasn’t such a lard-arse at the moment I may have taken a photo to show you. The scar runs from around an inch above my belly button to the top my pubic bone. It has healed very wide around an inch or more at the worst places and the skin is paper thin. I also have no sensation / feeling at all in my stomach about 2 inches either side of the scar as the nerves were cut ( I have had multiple surgeries). It’s caused me problems in the past due to burns. A few times I have ended up seeking hospital treatment as I have given myself a serious burn injury and not noticed until the skin has gone black. Like I said I have no feeling there.

 

The scar has also tethered at the end near my pubic bone. This means the scar tissue has adhered to the muscle underneath. It causes me no pain but means my stomach is divided into two parts due to the tethering.

 

I showed the doctor on my abdomen where the pain was, she felt it and I had to be peeled off the ceiling. At this point she told me that she wanted to ring the surgical team at the local hospital for advice as she felt it could be my appendix or it could be an ovarian cyst torsion ( meaning the ovary was twisting because of the cyst). Personally I thought with both I’d be in more pain than I was. I declined the call to the surgical team basically because I hate the local hospital. If I had been in severe pain, vomiting etc obviously I would have gone, I’m not an idiot. But I knew what would happen, lots of tests, no sleep, idiot medical professionals and sent home after being made to feel like a time waster. At this point all I wanted was my bed.

 

I made the doctor a solemn promise that should the pain intensify overnight that I would ring 999 and if it was bad tomorrow (now today) I’d ring them. She wasn’t totally happy but she knew I wasn’t going to hospital. I have to add here that even in that severe amount of pain my blood pressure reached the dizzying heights of 115/80 with a pulse of 95, oxygen 98%. When my blood pressure is normal ( doesn’t happen very often these days) when in pain I am normally in the 130/90 territory. So that just goes to show you how low my blood pressure has been of late.

Its not desperately low but I am 5ft 8 tall and not petite. Most doctors take my blood pressure and you can see that they are looking forward to giving me a lecture about my weight and high blood pressure. You can see the disappointment in their eyes when it comes back low! If my blood pressure is below around 115/80 I can be hideously symptomatic, every time I stand up I feel faint. This week I have been drinking expresso’s as it’s the only thing that gives my blood pressure a boost, even if it is only temporarily.

Around 2.30pm the doctor I saw yesterday rang to check how I was. That was really kind of her but I feel guilty for making her worry. It wasn’t a quick call either, she had a huge list of questions to ask to ensure I wasn’t brushing her off and telling her what I thought she wanted to hear. This is why I love the small practice I use as they have the time to care about their patients, it doesn’t feel like a conveyor belt. If you need longer than your allotted time then you get it and none of the other patients mind as they also know they won’t be rushed out the door.

 

My plan is when feeling slightly better that I will make a doctors appointment and ask to have this pain investigated. Personally I wouldn’t be surprised if my ovary is stuck to my appendix due to all the adhesions I have.  

 

I’ve been so rough over the last week or so I haven’t done very much in the way of sewing. I tried some hand sewing yesterday but couldn’t concentrate so gave up. Today I finished a Travis bag for one of my Instagram friends. Thankfully that was a quick bit of sewing as I had started it well over a week ago. I can’t put a photo up as she hasn’t received it yet. Jamie will be sending it tomorrow for me. The lovely lady and I have chatted a few times on IG and she asked me if she could send me one of her bags and give her an honest critique of her work, which is a bloody brave thing to do. The bag would be mine to keep. I couldn’t let her just send me a bag, as I knew she had a dog I thought I would send her a Travis bag.

 

This is the bag she sent me,

 

I absolutely love this bag. The quilting is amazing, she’s also used variegated thread so it goes dark and light which emphasises the quilting beautifully. I only wish that I could quilt as accurately as this!

Down the rabbit hole

What I have been holding my breath waiting for since the start of the year and all the bereavements we went through has finally happened. I knew at some point my health would be impacted and over the last 7 days it’s happened.

 

I’ve spent a few days in bed this week, purely because the chest pain on moving and the level of exhaustion was becoming unbearable. I really hate it when my health takes a nosedive as it can be months before I get back to where I was before. The same thing happened last year when we went through two bereavements in the space of 6 months. It took me from the May until the October to get anywhere near where I had been before.

 

I hate the feeling of helplessness and vulnerability this creates within me. I lose all motivation to do anything and just want to hide away from the world in the hope it will leave me alone. But it wont and I have to be a grown up and deal with the things that make me feel uncomfortable.

 

I am fed up with the professionals in my life telling me that my body’s  and minds response to this is normal, personally I’d prefer that they waved a magic wand and made it all go away. However I know it’s not going to happen so I just need to put my big girls pants on and get through this.

 

I am trying desperately hard not to fall down the rabbit hole and get seriously depressed. I won’t lie I am dealing with depression and anxiety at the moment. I have lost my sewjo, I have just been too exhausted and when I have tried to sew I’ve ended up with horrendous double vision. Sewing to me since October has been like breathing so to not be able to currently do it is frustrating. Hopefully it ( my sewjo ) will return soon and I will physically be able to do it.

Lifes a bit shit at the moment

Life’s a bit shit at the moment, I find quite often it goes like that. You can be on top of the world one day and thanking your lucky stars about how sweet things are and then the universe finds out and pulls the rug out from underneath you.

 

I am normally quite honest with my readers but this is stuff I can’t and won’t discuss for the time being. Rest assured hubby and I are fine as are our babies ( Mollie and Frankie). Its stuff outside us our little bubble that is impacting us. Its having a massive impact on my mental health as in my anxiety has spiralled out of control again, I feel constantly that I am on the verge of a panic attack if I am not 100% distracted.

 

I hate holding stuff back as I like to think above all else I am honest with you but it’s not my story or my life. The people in my bigger circle deserve their privacy and I will always respect that.

 

On top of this the heat has suddenly got to me. I can’t move without palpitations, I am feeling faint and generally exhausted. I would be very happy for a few cooler days just to give my body a rest and get things on a more even keel.

 

Due to everything that is going on at the moment not a lot of sewing has taken place. I have lost a bit of my sewjo, I have managed to get three bags started for friends and hopefully they will be completed this week. I just need the space and time to be able to do this, thankfully they are all very understanding and know that I can’t work to tight deadlines as I never know when my health will let me down. The mind is willing the body says nah!

 

I have decided to name my little dog walking pouches The Travis Bag,  after our first Weimaraner, who brought such love and joy to our lives. He loved his walks so I think it’s apt that these bags are named after him.

 

My first Quilt

It’s just going to be a little blog post this week as all of a sudden I have started to struggle with the heat. It is again ( as it was like this in the same week last year) much hotter than it would normally be in the UK for the time of year. The last few days I have been struggling with muscle weakness. One day I found myself unable to chew – must be my idiopathic hemifacial spasm playing up…. ***sarcasm*** because it went with an additional dose of mestinon. Obviously the placebo effect ….**sarcasm**

 

Around the middle of May I posted about my trip to the dentist and the fabric shop, where I chose the fabric I was going to use for my first ever proper quilt. Not a quilt as you go where the blocks are all laid out for you but an actual proper quilt. I had seen a quilt design I liked called “Floating Triangles” in a magazine called Simply Sewing designed by Janet Goddard. I loved the minimalist look of it and thought I’d love to make something like that.

 

So that was it, on a whim the fabric was bought and then it sat on my shelf in the kitchen until June 2nd, when I decided to start cutting it out.

 

 

 

A few days later I started to make the half square triangles (48 in total). I must be strange as I enjoy all aspects of sewing, it’s the cutting out I find hard but that’s been made a lot easier with my new creative grids stripology rulers. However for all the squares I had to cut out I couldn’t use my new rulers as they needed to measure 4 ⅞ inches. Typical! So I ended up making a cardboard template. I am useless at drawing straight lines, I really need to buy myself a set square to help in situations like this. I have already invested in a compass for the centre of my Dresden Plate designs!

 

 

The following day I started adding the strips to my half square triangles. Unfortunately I was a little over eager on my trimming of my half square triangles and found that I had to remake a load of half square triangles as they were so much smaller than the others and it would have made the rows wonky. I think in total as further down the line I had to make some more blocks I probably had to remake 10-15. Its annoying but I have kept them all as I will sew them together to make a bag, as I love the fabrics I chose for the quilt. I also had to buy more backing material due to my many cock ups with measuring. Thankfully with the new rulers those should be less!

 

Oh I forgot to tell you about my EPIC mistake of accidentally having two rotary cutting blades on my cutter. How did that happen? Well I bought some expensive blades and they were all covered in oil. I am guessing when I replaced a dull blade I didn’t check properly that it was just one blade. So it cut all my material as if a hoard of hungry mice had been chewing the side of it. Thankfully most of that could be hidden in the seam allowance. I am telling you this because some people seem to think everything I do is perfect and I never make a mistake. Of course I do! If I didn’t make any mistakes I’d never learn anything. I want you to know mistakes are ok, even if I am known on Instagram now to some people as “Two Blades Rach”. It’s quite funny really!

 

 

Once I had made all my blocks I sat down and worked out the plan of my triangles. It was important that I did this so I knew how my rows would go together. I also wanted to place certain fabrics together so they had a bigger impact rather than drowning each other out. I did a full size quilt plan and then I broke that quilt plan down into two.

 

 

 

Once my blocks were made I then put them away in a box and cracked on with a lot of makes for other people, birthday presents, thank you gifts and of course fathers day. I made Jay an Owl soft toy for father’s day which you can see on last week’s blog post. I also made him this lavender pillow

 

Front

 

Completed lavender pillow

 

Tula Pink Fabric back of pillow

I kept putting off making my quilt as I was terrified all the blocks would be all the wrong size and it would be a disaster. It is quite common for me to ignore a project for a bit if I am feeling anxious about it. I also have to be in the mood to sew certain things. I have to be in the mood to make clothes – I find it boring and hard work because I have such a skills gap. I have to be in the mood to quilt as it takes a long time and you can be doing the same thing over and over. It also involves a lot of pressing which in this heat you really don’t want to be doing. It wasn’t until I started making quilts that I learned there was an actual difference between ironing something and pressing something.

 

Last Friday I decided to bite the bullet and put this quilt together. I really hate having WIP’s ( work in progress) hanging around and I don’t do UFO’s (unfinished objects). I have a small house so projects need to be completed and gone rather than hanging around collecting dust! I checked all the sizes of the blocks and as I said earlier realised that some weren’t good enough and needed to be done again. So that added more time onto getting the quilt completed. For me it seems like it’s taken an absolute age to get done but Jay assure me to him it feels like he went to work one day and came back to a completed quilt!

 

 

I only managed to sew the rows together that day, as a lot of planning had gone into each row. Checking against my quilt plan I put all the rows in order using post it notes on each – with the fabric order on also, so that the chances of me making a mistake were minimal. I have made mistakes before with my quilt as you go quilts, where I have decided on an order that the blocks would go in. Taken photographs, only to realise once its all been sewn together…………..3 blocks have been sewn upside down totally ruining the pattern I had wanted to create. At the point of discovery of my mistake it was too late, I had sashed and bound it by then. Lesson learned, this time I over planned!

 

On the Saturday I started to sew my rows together.

 

As it was only 8 rows it went together very quickly, however disaster struck on the 8th and final row when I realised I had sewn the blocks together in the wrong order. Out came my trusty seam ripper and the blocks were then sewn in the correct order. I am so glad I managed to catch that mistake before continuing as it would have stuck out like a sore thumb otherwise the final row would have been completely different to all the other. If I am honest there was a lot of unpicking as the rows were sewn together as I managed to sew triangles together in the wrong position etc. I never let this wind me up though, I’d rather find a mistake at this point than like the quilt as you go first quilt I made.

 

I then cut ( using my stripology ruler) my borders for the quilt and sewed those on. At this point I was just totally in awe of what I had created. My first ever quilt top was sewn together. This was a huge moment for me! I then decided **ck it and decided I would baste my quilt. Basting is basically putting on your wadding and backing fabric, to the quilt top. As I didn’t have much room I did it in two halves not ideal but there was nowhere with enough floor space for me to work. I did it using the ironing board, it wasn’t perfect but it was done. I used a temporary glue spray and safety pins around the edges to ensure it was secure.

 

Sunday was the day I decided to quilt my quilt, that sounds bizarre but a quilt isn’t a quilt until you have sewn all three layers together. This quilt had a very basic pattern just straight line stitches that went through every second row of triangles. I managed to get some floor space in the lounge whilst everyone else was asleep and I marked out the quilting lines with a fabric marker and my huge ruler ( another creative grids one). Thankfully I had set my machine up the day before, so my extension table was on ( I discovered a neat trick as my extension table can move a little, especially when I bash the edge of it by accident, so I used masking tape to keep it in place just taping from one edge of the table to the other sticking it on the bottom of the throat space of my machine – avoiding the needle plate. I only used two strips of tape). I had also ensured that I had rested as much as possible, as I wont sew when I am tired. I started quilting on Sunday afternoon whilst Jay watched the England match. I was finished just after half time. I forgot to say I used my walking foot. I had to unpick a couple of little bits due to puckers and re sew them but its the neatest quilt back I have ever sewn.

 

 

Yesterday (Monday) I decided I would make my scrappy binding and then attach it to my quilt. I machine sewed the front of the binding in place using a tutorial from Lucy Brennans https://www.charmaboutyou.com/ blog. It went on very easily and then I had the afternoon to slow sew the binding onto the back. I finished late yesterday afternoon ( lots of frequent breaks as I have been really struggling with double vision the last few days so that makes threading a needle an absolute nightmare).

 

 

I had made a label for my quilt on Sunday evening but my eyes were so bad by the time I had finished sewing the binding on that I had to stop. I sewed my label on this morning at around 7am as I had been up for an hour or so by then.

 

 

Once the quilt label was on it was time to give it a wash to get rid of the temporary glue and the fabric marker from the quilt lines.

 

 

I am so pleased with this quilt I am still in shock that I made this!

 

And obviously I lied when I said it was going to be a little post, hubby brought our huge fan down from the loft this morning and put in the lounge for me. What a difference that’s made for me and the dogs!

 

Sewing Secrets

I am officially one of the worlds worst secret keepers! How I have managed to keep the following items a secret over the last few weeks is beyond me. When I make something for someone I always want to give it to them immediately  or I accidentally let slip what it is. This time however I have been strong even though it has been incredibly hard.

 

A few times recently in blog posts I have said that I have been unable to share what I have been making that week due to it being a present. Thankfully I can now share with you my makes – which I am incredibly proud of as these two birthday girls have received their gifts.

 

Imogen will be 21 on 23rd June and is incredibly special to both me and Mr Myasthenia Kid. I discussed with him months ago what I would like to make for Imogen’s birthday and he was in full agreement. It took me a little while to source the material as I wanted all kinds of Unicorn fabric but I also wanted it in Pink and Grey so it wasn’t over the top girly.  The first item I made was a 20 inch square cushion cover in a Dresden Plate design

 

I had a bit of a nightmare with the cushion pad as although it was sold as a 20 inch cushion pad, it was actually a lot bigger. I, being a novice and idiot didn’t think to measure the cushion pad before I started making the cushion. I just presumed that if something was being sold as a 20 inch square cushion pad that is exactly what it would be.  So when I placed the cushion pad inside the cover it looked terrible – in fact stuffed sausage would be an accurate description. I was almost in tears as I had worked so hard. So I decided to measure my completed cushion cover and make my own cushion pad to fit it. I used my overlocker to do the edges of the cushion pad and the ladder stitched it closed once I had placed the stuffing inside. I took apart the bought cushion pad and ended up with two nice squares of white fabric and a little excess stuffing.

I also wanted to make Imogen a quilted patchwork Tote bag. I had already made one as a project in my subscription box was this exact thing and they had sent out 42 charm squares, lining and webbing for it to be completed. I had really enjoyed putting it together and couldn’t get over how much I was using the bag as it was so roomy yet so light weight. So I made my own charm squares and bought the webbing online andknocked up one for Imogen.

 

 

I scotch guarded both the cushion and the bag to help resist stains. Imogen can be a little clumsy the same way I can. I also gave washing and ironing instructions with each.

 

Last week on the spur of the moment I decided to add something extra to Imogen’s gift. I had been doing some redwork for my other friends gift but want to change it up a bit so I found a  unicorn design online, unfortunately there is no attribution for this work so I can’t give credit to the artist. I did change it up just slightly by putting a heart around it and not using the words that had been printed under the design. Here is the finished item

 

 

I have filled the inside of the cushion with a mixture of stuffing and dried lavender. It smells divine and the whole house smelt of it for a few hours as I filled several lavender pillows that day. I again provided washing instructions / care instructions just in case. Imogen was given her gifts on Saturday. The message she sent me after opening them was so lovely it made me cry, then Imogen’s mum Helen sent me a message in the evening which was really lovely too and that made me cry as well. It’s really nice when you have spent hours working on an item and the person is overwhelmed by it and is truly grateful for them.

 

My oldest Exmouth friend Ellie also has a birthday in June ( not until the 30th but with works schedules etc it was difficult to know when I would see her next) . I gave her the gifts I had made this morning.

 

This is a redwork lavender pillow. The redwork design was free from a site called https://www.birdbraindesigns.net/ which has some really lovely designs on there. I added my own embellishments to the design and also added Ellie’s initial to make it even more personal.

 

 

This has again been filled with stuffing and lavender. It’s a lovely small size that could be placed under a pillow or in a drawer to leave the scent of lavender behind. I have really enjoyed doing the redwork and have made several more as gifts for people. They take me several hours to do but I really enjoy sewing them. The stitches on these and the unicorn cushion are very basic just a running stitch, back-stitch and french knot are all that are needed to create something that can look quite stunning.

 

The second part of Ellie’s gift had been in the planning stages for ages. I was scared to start it as it was something different than I had ever made before. Plus I kept adding to the level of difficulty. It was the first time I had used the product Odecoat which ( depending on how much you use) can make something totally waterproof. I did enough to make the item water-resistant / stain resistant inside and out.  This was also the first time I had used my machines embroidery functions, I also used the memory function. I used an iron on stabiliser as well and proper embroidery thread. So it was a project of firsts. The pattern comes from Lucy Brennans blog / website https://www.charmaboutyou.com/ and the pattern is the #pieceofmepouch. It’s so stunning and once I had my head around it not difficult to make. I also have to say a massive thank you to Lucy who helped me out when I was being a bit dim and not understanding the pattern. Lucy is always so encouraging and supportive, I can’t thank her enough.

 

 

This week I also had to make my dads father’s day gift.This had been rattling around in my brain for weeks. I knew I wanted to make him something that was special and a one-off but what. I decided after gaining confidence making the piece of me pouch that I could use aspects of that and make my dad a bag to carry his (clean and empty) dog poo bags. I decided that I wanted curved edges on the top, that I wanted it to be 3D rather than 2D. I wanted a loop on the back so he could attach it to a belt and I also wanted a clip on it so that should he not be wearing a belt he could attach it to his belt loops. It also had to be small enough that it would impede his walking.

 

In my mind’s eye I could see exactly what I wanted so last Wednesday morning I sat with an empty bonio box ( dog biscuits)  in front of me and made my template. I used Odecoat again to help make the fabric water-resistant and to make it a bit stiffer. Also when I quilted it, I made the lines much closer together as I knew this would make it much more rigid. I am delighted with the way it’s turned out. Unfortunately due to a series of events out of both of our control I have been unable to give it to him as yet. I am pretty sure he doesn’t read my blog – mum does so I will be safe posting it here.

 

 

My last make of the week was this Owl stuffed toy for Jamie, it was his father’s day present from the dogs.

 

I absolutely adore this and it looks so cool on his bed! So far the dogs have left it alone.

 

* * *

Health wise I have been up and down. The heat had been causing a lot more ptosis than normal. I can really feel the mestinon wearing off after a few hours so I have had to been really strict with my dosing schedule. As once I get full-blown ptosis it can be difficult to shift.

 

I managed to have a large abscess develop under my breast due to the chronic skin condition Hidradenitis Suppurativa. Tuesday afternoon this decided to erupt and immediately go into cellulitis. My breast was so painful I couldn’t wear a bra. Thankfully the antibiotics had it  gone right down within 3 days.

 

A few days over this last week I have been woken up in the night in a lot of pain with a headache ( not a migraine) . I managed to work out on Sunday that it had been due to the position I had been holding my neck in whilst sewing. This was causing me pain through my collar-bone and deep into the soft tissue of my neck. This was then causing me to have awful headaches. I actually got very paranoid that my CSF leak was back, until Mr Myasthenia Kid pointed out that Leak headaches don’t start when you are lying down, they start on sitting up. This headache was with me whatever position I was in. It was not a leak headache more poor posture due to the heat making my muscles weaker than normal.

 

This morning I woke up with a bad pain under my sternum and a burning feeling in the back of my throat. I immediately worked out that when I had taken my 4am antibiotic (despite drinking loads) it had become stuck in my gullet. The tablet had dissolved in the back of my throat and burnt the tissue. I have been drinking gaviscon straight from the bottle and drinking only water to settle it down. It is feeling better than it was but there is still a burning pain. I have had issues with taking capsules for years due to problems with my swallowing. This just highlights again how much weaker this has become during the heat.

 

So although it may seem like I must be doing ok because I have sewn loads don’t let online appearances fool you. Everyday I am on the maximum amount of painkillers I can take as my back is so awful at the moment I have been having pins and needles in both legs. I’m either too hot and feeling faint or feeling cold thanks to my wonky Autonomic nervous system. I am just determined to do my best every day and be the best that I can be and let the creative juices flow. It is what makes me happy. It doesn’t take away all the shitty  health conditions I am living with every day of my life.

Even Weirder

If last week was a weird week I haven’t got a clue what this one should be called! I had more vertigo, a migraine from hell, so bad that Mr Myasthenia Kid had to take the day off from work to look after me – more about that later and I can’t share any of my sewing makes over the last few days as they are all birthday presents for friends between 23rd June and the end of August. A little frustrating when I am so pleased with all of them, The good news is that my sewing job list on my phone for the months of May and June have reduced dramatically!

 

As I wrote in my last blog post I attended a course last Wednesday regarding how to use my overlocker. I was so excited about the course and I hate to say it but it was a real let down. It was everything a teaching session shouldn’t be. In a previous lifetime (1996-2005) I held the position of Training Manager at my place of employment. I was responsible for all the training that took place for the 350 plus staff we employed at the time. Not only that I was also sent to various other locations throughout the south-west to teach other Training Managers (they were also sent to work with me to get an understanding of their role) and to teach staff for new store openings. I loved the job and I am not afraid to say that I was bloody good at it. It broke my heart when head office in its wisdom decided to get rid of the role. Training quality immediately plummeted – in my workplace. I have been sorely tempted over the last few years to do  a  freedom of information request to see how many court cases they have had since removing the Training Manager role.

 

So with nearly ten years of teaching under my belt, I know that people have varied learning styles. Some learn by watching something and then having a go, some people learn by reading a manual and some people learn by a mixture of those two. Unfortunately the course seemed to be mainly the us the students sat at our machine with the trainer talking at us. So bored was I that I actually got my phone out and started to look at Facebook – discreetly. I didn’t want to be rude but I had to do something to keep myself awake as the stairs getting up to the classroom had nearly killed me. Oxygen was almost required – this was not suitable for the disabled sewist.

 

The course had been billed as getting to know your machine – I’d had mine since 13th April so rather than being terrified I had dived straight in. It became clear talking to the other 7 pupils ( excluding my mum, yes 9 people to one tutor how on earth could all of us see anything when she demonstrated at a machine?) that they had never even opened the boxes that their overlockers had come in, that possibly mum and I were too advanced for this course. I obviously wound the tutor up when after she dramatically cut all 4 threads on my overlocker and asked me to re-thread it and I had it done in less than 5 minutes. She told me off for using my machine when I was checking that it was chaining (working properly). She didn’t realise that I had threaded it and actually knew a little about what I was doing. The course went downhill from there.

 

Three people’s machines broke during the day and not once did the tutor offer any support, instead there were sarcastic comments dressed up as imparting information that certain brands of machines were basically crap and  It concerned me that someone who claimed to know so much about brands was unaware that Elna and Janome are the same company. One lady went downstairs and bought a new machine but still this woman ploughed on and didn’t recap with the lady what she had missed. The same happened when my mum’s machine broke.

 

By the end of the day I could barely maintain a civil composure, I was threading my mum’s machine to ensure that she had a working machine when we left the course – thankfully her machine was repaired there and then by the shop owners – I can’t fault them at all. I love their shop and they have always been lovely which is why I am not naming the location of the class as I wouldn’t want to damage their reputation, when this was someone who obviously comes in and works for the. The teacher was demanding yet again mum and I stand in front of a machine that we wouldn’t have a clear view of – when both of us have mobility issues which were obvious due to the mobility aids we were using. I practically hissed that I was beyond tired as was my mother and having a working machine before leaving the shop was slightly more important than looking at the backs of people’s heads. I then let her look at the back of mine as I got on with threading mum’s machine – something the tutor should have done when she was told mum was having issues seeing properly due to the light coming in through the window.

 

All I can say is thank fuck I didn’t pay full price for that class. I still feel ripped off knowing I paid £27 for it. I will be honest yes I learned some bits and pieces but not £27 worth.

 

Thursday was a complete right off as at 2am I woke up with a migraine, it was hideous. I couldn’t stop being sick and by the time Jamie found me lying in the dark at 9am I could barely speak. By 2pm I was starting to come around but I was just completely drained. However my back would not put up with me lying in bed any longer so I forced myself downstairs.

 

I was wiped out by the migraine for a good couple of days but I did get some sewing done. I managed to make a start on my floating triangle quilt, so the week wasn’t a complete right off. I have started taking pizotifen again in the hope that it prevents more migraines in the future or if not it at least reduces the intensity. I can’t cope with that again nothing stops the pain or the sickness.

 

My quilt pieces, this is as far as I have got as the rest of my time has been taken up making birthday presents,

 

 

Now all that is left to do is to join them all together in the right order!